IMPORTANCE Regional, facility, and racial and ethnic variability in intensity of care provided to nursing home residents with advanced dementia is well documented but poorly understood.OBJECTIVE To assess the factors associated with facility and regional variation in the intensity of care for nursing home residents with advanced dementia.

Background Regional, facility, and racial variability in intensity of care provided to nursing home (NH) residents with advanced dementia is poorly understood. Materials and Methods Assessment of Disparities and Variation for Alzheimer's disease NH Care at End of life (ADVANCE) is a multisite qualitative study of 14 NHs from four hospital referral regions providing varied intensity of advanced dementia care based on tube‐feeding and hospital transfer rates. This report explored the perceptions and experiences of Black and White proxies (N = 44) of residents with advanced dementia to elucidate factors driving these variations. Framework analyses revealed themes and subthemes within the following a priori domains: understanding of advanced dementia and care decisions, preferences related to end‐of‐life care, advance care planning, decision‐making about managing feeding problems and acute illness, communication and trust in NH providers, support, and spirituality in decision‐making. Matrix analyses explored similarities/differences by proxy race. Data were collected from June 1, 2018 to July 31, 2021. Results Among 44 proxies interviewed, 19 (43.1%) were Black, 36 (81.8%) were female, and 26 (59.0%) were adult children of residents. In facilities with the lowest intensity of care, Black and White proxies consistently reported having had previous conversations with residents about wishes for end‐of‐life care and generally better communication with providers. Black proxies held numerous misconceptions about the clinical course of advanced dementia and effectiveness of treatment options, notably tube‐feeding and cardiopulmonary resuscitation. Black and White proxies described mistrust of NH staff but did so towards different staffing roles. Religious and spiritual beliefs commonly thought to underlie preferences for more intense care among Black residents, were rarely, but equally mentioned by race. Conclusions This report refuted commonly held assumptions about religiosity and spirituality as drivers of racial variations in advanced dementia care and revealed several actionable facility‐level factors, which may help reduce these variations.

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Objectives Assessment of Disparities and Variation for Alzheimer’s disease Nursing home Care at End of life (ADVANCE) is a multisite qualitative study of regionally diverse NHs (N=14) providing varied intensity of advanced dementia care. ADVANCE-C explored the experiences of NH staff and proxies during the COVID-19 pandemic. Methods Data collection occurred in five of the ADVANCE facilities located in Georgia (N=3) and New York (N=2). Semi-structured qualitative interviews with NH staff (N=38) and proxies of advanced dementia residents (N=7) were conducted. Framework analyses explored five staff domains: care processes, decision making, organizational resources, vaccinations, and personal experience, and five proxy domains: connecting with residents, NH response, communicating with NH, decision making, and personal impact of the pandemic. Results Staff mentioned difficulties implementing infection control policies specifically for advanced dementia residents. Staff reported trust between the facility and proxies as critical in making decisions during the pandemic. All staff participants spoke about “coming together” to address persistent staffing shortages. Proxies described their role as an “emotional rollercoaster”, emphasizing how hard it was being separate from their loved ones. The accommodations made for NH residents were not beneficial for those with advanced dementia. The majority of proxies felt NH staff were doing their best and expressed deep appreciation for their care. Discussion Caring for advanced dementia residents during the COVID-19 pandemic had unique challenges for both staff and proxies. Strategies for similar future crises should strive to balance best practices to contain the virus while maintaining family connections and person-centered care.

Nursing homes (NHs) are an important site of death for residents with advanced dementia. Few studies have explored the experiences of NH staff about providing end-of-life care for residents with advanced dementia. This study aimed to describe NH staff perceptions on where end-of-life care should be delivered, the role of Medicare hospice care, and their experiences providing end-of-life care to residents with advanced dementia. Data from the Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life study were used to explore the study objectives. Semistructured interviews with 158 NH staff working in 13 NHs across the United States were analyzed. Most NH staff endorsed the NH as a better site of death for residents with advanced dementia compared with a hospital. They expressed mixed perceptions about hospice care. However, regardless of their role, the staff expressed experiencing difficult emotions while providing end-of-life care to residents with dementia because of the close attachments they had formed with them and bearing witness to their decline. The findings show that most NH staff have strong emotional attachments to their dying residents with dementia and prefer to care for them at the NH rather than transfer them to the hospital.